Over 11 million, or approximately 15%, of children in the United States, have chronic or special health care needs. Due to advances in medical care, nutrition, and other services, youth with conditions that were historically fatal in childhood are surviving long into adulthood. An estimated 750,000 adolescents with special medical needs turn eighteen every year. They not only account for a disproportionate amount of health care expenditures, many may not be able to work and contribute in other ways to the economy. Representative medical conditions in this “transition to adulthood” group include: childhood cancers, complex congenital heart disease, cystic fibrosis, asthma, diabetes, epilepsy, hemophilia, HIV/AIDS, inflammatory gastrointestinal disorders, rheumatologic disorders, mitochondrial disorders, genetic and neurodevelopmental conditions, renal diseases, and disfiguring dermatologic diseases. Many of these conditions involve repeat hospitalizations, surgical procedures, medications with significant side effects, and substantial physical pain.

The medically ill transition to adulthood populations is also at risk for significant mood, anxiety, and substance use disorders as a consequence of the stresses of their illnesses and side effects of necessary medications. Relationships with parents and siblings can be conflictual, overly dependent, or ajar from usual developmental expectations. Peer relationships may be fewer or less mutual. Educational goals and accomplishments are out of sync due to missed classes and reduced course loads, and careers and employment may be delayed or foregone. In addition, these chronically ill adolescents and young adults are subject to the same psychiatric vulnerabilities as medically healthy youth. These include, but are not limited to mood, psychotic, eating, and substance use disorders. Unintentional injuries, such as automobile accidents, is the leading cause of death, followed by homicide and suicide.

No data exists about the religious and spiritual lives of these medically ill young people crossing from pediatrics to the adult medical world. This paper, however, will review findings from the Pew Research Center on Religion and Public Life and from sociologist of religion Dr. Christian Smith’s work on emerging adults that have relevance to the medically ill transition to adulthood group. In addition, questions of theodicy, the meaning of life, and the religious and spiritual angst of palliative and end-of-life care are being experienced by increasing numbers of youth with chronic illnesses transitioning to adulthood. The roles of spirituality and religious beliefs, rituals, and communities are arising more often as young people with chronic and terminal conditions pursue education, jobs and careers, marry, and seek to have families, even as they live with the pain and disability of their illnesses.

This presentation will review the medical and psychiatric contributions to potential pain and suffering for those medically ill youth transitioning to adult medical care. The implications of their illnesses for religious/spiritual lives will be discussed, including how medical and faith communities can work together to provide care for this group of individuals and their loved ones.